help for newbie

Having lived like this for so long I was wondering if anyone could answer a "dumb" question.......

What is the difference between a mild flare up, full flare up, going away, remission, starting signs of a flare up? How can I tell if something is working or not? Many of you seem to stay on drugs but still have some symptoms. What is ok, what isn't? Etc. Etc...

My life the last few years has been the same and I would like to know what I should be looking for.

Remission = going to the bathroom 1-3 times a day, no bleeding, no D, no urgency, no pain

I usually know if something is working by the lack of symptoms or the decline of symptoms. If I start to feel better then I know whatever I am taking is working right.SHERRYModerator-Allergies/Asthma and Alzheimer's, Co-moderator-UC~Left sided Uc-'92**Unable to tolerate ALL mesalamines**Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

Yeah, I agree with Sherry.I believe the "official" BM # to separate mild from severe is 4, however 4 is my usual # and I consider my state to be "normal" at 4.Everyone, whether healthy or UC, has a different BM schedule. Some people eliminate much less than others, so there is no real "normal" whether you have UC or not. It's just what is normal for you.

Speaking for myself, why I stay on meds even though I have symptoms: What alternative do I have?I quit drugs (6mp, Entocort) whose side effects were worse than benefits.And I do not want to go on Remicade or Humira because for me the risks outweigh benefits and because I can function with my current symptoms.

What about you? You say "My life has been the same..." Is it OK or do you want it to be better?In remission April 2010 after 10 years of UC with no remission everJan 2010 began SpecCarbDiet (modified to remove dairy, fruit & juices,)Gluten-free=bleeding stopped in 3 days, 95% remission in 5.5 months on SCDSCDiet: Gluten/grain-free, starch-free, low carb, honey as sweetener(9)Balsalazide+(6)Citrucel+VSL#3 daily, mesalamine enema as neededCurcumin/turmeric pill, D3 5000, L-glutamine

Beginning of flare: narrow/skinny poo, some mucous, maybe a little blood and constipation.

Mild: some blood, mucous, cramping, your poo is soft and falling apart. Possibly some cramping. Maybe you get cramps but only get mucous when you go to the bathroom sometimes.

Bad flare: (there are certainly degrees between mild and "full" as I'm taking full to mean bad) Lots of blood and mucous, watery/liquidy poop, bad cramps, maybe not digesting your food all the way, you get worn out. Multiple bowel movements every day.

Remission (FOR ME): one bm a day, possibly every other day, fully formed, normally colored, I can eat what I want, but am still on medication. Some people have to watch their diet to maintain this.

Going away: I guess would be a long remission without meds or many other maitenance measures... but it never really goes away.21yr old female diagnosed with UC in 2005 at age 15 125mg AzathioprineJust got over flare, but now stuff is happening....Arthritis Also: asthma, acid reflux, and Raynaud's Syndrome

My brother, one of my sisters, and I all suffer from UC; however, I suffer the most mild symptoms of the three of us.

I'm pretty good about remembering to take my meds twice daily, and a pill box helps quite a bit. If I miss a dose of my meds one day, I suffer no ill effects. My sister cannot miss one dose or she suffers a flare up.

I've recently started getting my Asacol from Canada, and I've suffered no ill effects. There might have been a couple of days immediately after the switch when I felt some noticeable but mild stomach discomfort--definitely not severe.

My brother switched from Asacol to a different med last year at the insistence of his doc, and he wound up in the hospital. He's now much more insistent and a much more vocal patient advocate.

The bottomline is that you know you best. I knew my acid reflux was overall quite mild, so I wasn't all that concerned when I ventured into a med switch from brand Nexium to generic omeprazole. That went well, so I then ventured into switching my source for Asacol, and that has gone well.

Talk to others, ask questions, and be a strong patient advocate.

If something is working, I would tend to stick with it. If something is not working, search for something else that does work.

Hopefully this isn't too meandering and actually provides some helpful advice.KenAge 431200 mg Canadian Asacol twice a day20 mg Omeprazole once a day

Thank you thank you all!! This is the information that I have been looking for. I just needed to feel that what I was going through was normal. I feel as if some of you could have written the last two years of my (bowel) life. I am new and just wanted assurance that what I had been going through was "normal" or standard. I have had all of the above, with severe joint pain also. I feel that my GI doctor is not really interested and wanted to know if I was crazy or if my gut feeling is right. I have had problems for years, and a severe bout in 07 where I had a colonoscopy for bleeding, but he said he did not see anything and it must have been internal hems. Now this December I had an awful bout with severe pain and bleeding, d, cramping, pencil stools, urges to bm with only mucus(lots and lots of mucus) and blood, etc. etc...My biopsy came back stating moderate uc, but he brushed it off saying it was too high and he thought it might be a virus or bacterial. I am lost. I had an upper GI done this week to look for Crohns ( is this a good indicator of this disease?) or should an endoscopy have been done? I am only questioning BECAUSE my doctor seems to be brushing it off as unimportant. How will I know what I have if the doctor disagrees with the test? I have not lost weight, is this why? I am a stress eater, and eat ESPECIALLY when I am ill. I am not morbid, but could lose a few. Sorry for my rambling, I just have so much in my head right now.

Oh and of course the nausea and fatigue and night sweats with joint pain( which means no sleep) Plus the pain in my belly. What do you all do for these symptoms?????? I do not know what to expect or ask for. Can any of this be helped?

What sort of meds are you on at the moment? For my abdominal cramping I take Bentyl which is an anti spasm pill which is the what the cramping is - a spasm. There is not much you can do to help with the night sweats but with nausea they have anti-nausea pills or you can try drinking ginger or peppermint decaf tea.

Personally to me, it sounds like you need a new GI. One that is a little more sympathetic. He doesn't sound like a doc that is taking you seriously.SHERRYModerator-Allergies/Asthma and Alzheimer's, Co-moderator-UC~Left sided Uc-'92**Unable to tolerate ALL mesalamines**Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

A mild flare up for me is a little blood, loose stools, gas, increased BMsModerate is mucus, blood, loose stools, frequency, cramping, multiple movements each day, skinny stools, bad odor, gasSevere is mucus, blood, going to the toilet just to pass blood and mucus, 15+ movements per day, awful odor, inability to pass gas without passing liquid, urgency, weight loss, anemia, no desire to eat because of the repercussions, extremely painful cramping, feeling like you're "not done", exhaustionremission is one or two formed movements a day - whatever was normal for you prior to developing UC

I have had all of the above , at different times, but NOT weight loss......I am a "emotional" eater.... I eat WHEN I feel ill, bad, etc....Is this uncommon??? I guess I do not weigh as much as I could ?????, I am not small, but I am not huge. But I definately have not lost weight.Christine

With Uc there is no one shoe fits all description. We are all so different on how this disease presents itself to how we do with our meds or food. Not every person with an IBD is going to lose weight or be skinny. My mother, who had Crohn's, was obese; I have Uc and I am skinny.SHERRYModerator-Allergies/Asthma and Alzheimer's, Co-moderator-UC~Left sided Uc-'92**Unable to tolerate ALL mesalamines**Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

I definitely lose weight during flares, but if you're eating more than most people do during flares, you probably won't lose so much. Which is probably doing yourself a favor.21yr old female diagnosed with UC in 2005 at age 15 125mg AzathioprineJust got over flare, but now stuff is happening....Arthritis Also: asthma, acid reflux, and Raynaud's Syndrome

This is a 'no question is too silly' kind of forum. You learn as you live with Uc and each day you learn something new. Even after having this for many years, you can still learn new things.SHERRYModerator-Allergies/Asthma and Alzheimer's, Co-moderator-UC~Left sided Uc-'92**Unable to tolerate ALL mesalamines**Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

Which is funny to me because until recently I did not know that my "normal" texture of bm the last couple years is considered diarreah(sp). I am an educated (even medical term educated!) person, and yet I did not know what d was....lol So texture talk to me is very interesting right now..LOLChristine